Whether he’s riding with his family on their all-terrain vehicle (ATV) at home in Mississippi, learning how to fish or playing with his cousins, Ethan Claborn is happiest when he’s outdoors. Simple things like a blade of grass or drop of rain are even more special for this almost four-year-old, considering he spent the first year of his life within hospital walls.

Ethan’s parents, Holly and Gary, knew even before he was born that he would face several health challenges. But it still felt like a shock when, not long after birth, he was rushed into surgery to treat an intestinal blockage. Diagnosed with ileal atresia, a defect in which part of the intestine doesn’t form correctly, Ethan was unable to absorb nutrients properly, putting him at risk for malnutrition. Children with this condition often need to receive nutrients intravenously — but long-term IV feeding, also known as total parenteral nutrition (TPN), can lead to liver injury.

The Claborns endured a long five months at their local hospital’s neonatal intensive care unit (NICU), where they experienced the stark reality of life with a very sick infant: They couldn’t spend the night with their new baby, let alone bring him home. Worse, Ethan remained seriously ill, unable to gain weight or thrive.

‘A long shot’

One night, after another exhausting day at the NICU, Holly was watching a TV news program when she saw a segment spotlighting a potentially lifesaving new treatment for liver disease in children. The product, Omegaven, is a fish oil-based experimental drug developed by Dr. Mark Puder in the Center for Advanced Intestinal Rehabilitation. Boston Children’s Hospital was the first hospital with compassionate use clearance from the FDA to provide Omegaven for patients with parenteral nutrition-associated liver disease; a complication that can be fatal if untreated.

“We figured it was a long shot, but Holly decided to contact Dr. Puder right then,” says Gary. “It was 1:30 a.m. on the East Coast — what were the odds that this Harvard doctor would even see our email, let alone respond?”

They got their answer 15 minutes later, when Dr. Puder sent them a reply. Within a week, Ethan and his parents were on their way to Boston.

Ups and downs

As Ethan’s care team formulated his treatment plan, the Claborns settled in to what would soon become their home away from home at Boston Children’s. “For the first time since he was born, we were able to sleep in the same room as our son,” Gary remembers. Ethan joined the research protocol for Omegaven and also continued receiving nutrients through a gastrostomy, or G-tube, in his stomach. Three days before Christmas, he was strong enough to go home.

But Ethan was hardly out of the woods. The family soon returned to Boston Children’s so that Dr. Biren Modi could surgically insert a longer IV, also called a central line, for longer-term feedings. Back in Mississippi, Ethan’s nursery began to resemble a pharmacy as Holly and Gary cared for Ethan. “As a parent of a chronically sick child, you have to sleep with one eye open,” says Gary. “It’s difficult to travel or visit family and friends — you need to schedule your life around feedings.”

More than a sandwich

With time, however, the Claborns’ dedication paid off. Ethan began to gain weight and in 2015, his central line was removed, followed by the G-tube this March. In fact, during a recent visit, Modi joked that Ethan’s growth is off the charts now — a milestone the boy celebrated with his first-ever turkey sandwich. “A sandwich seems like such a silly thing to get excited about,” his father admits. “But when your child hasn’t been eating, it’s a big deal.”

Today, Ethan still copes with some health challenges, including a chronic vitamin B12 deficiency and speech delays. But that hasn’t stopped this bright little boy from learning to read, playing golf and gleefully demanding “ranger rides” on the ATV. Meanwhile, his parents feel reassured that his future is in good hands. “They call this program CAIR, but it might as well be CARE,” says Gary. “We wouldn’t want to go anywhere else.”